"I have seen a number of news items recently, including periodicals which should know better, saying something like this:

“Disability Living Allowance, the benefit that helps with the extra costs of being disabled, is being replaced by PIP. PIP will have regular face-to-face assessments, rather than DLA which was based on self-assessment questionnaires.”

This makes it sound like DLA was an easy benefit to get, that it didn’t require any medical evidence, and that the fraud level therefore must have been high. It is plain misleading, and the truth of what is happening is being buried under debates about Wizard of Oz songs in the charts.

Let me tell you the real deal with DLA.

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In 2008, when I first realised I was disabled enough to qualify for DLA, I filled in a questionnaire. It was relatively simple, with tick boxes, and you were given the option to write a little more. I ticked the ones applying to me (I couldn’t cook a meal for myself), and briefly explained the nature of my illness and why that meant that I was physically unable to cook for myself. You were asked for your GP’s details, so I assumed they would phone my GP to confirm my illness and the extent of my disability.

They didn’t phone. They just refused my claim.

The letter said, “You do not qualify for DLA Lower Rate Care because you can cook a meal for yourself.”

Just that.

They had not met me or contacted anyone who had examined me. They just looked at my description of my disability and called me a liar.

I quickly discovered that this was not an unusual case: most people were turned down initially, and you had to go to a tribunal in order to get the right decision. I learnt that although the form appeared simple enough, you would not have a chance of getting your award unless you provided medical evidence from a doctor. Why they had not written that on the guidance notes, I just don’t know. In cases where they weren’t sure, they had their own medical examiner who assessed the claimant in person.

So I appealed and provided them with a letter from my specialist who knew me and my condition well and had written up the notes of my latest appointment with him. He confirmed everything I’d said on the form.

In due course I had a reply from the DWP: it was still a no. This time they had called both me and my doctor a liar.

I got mad, so I went to tribunal for further appeal.

At any point during this process, they could have sent the DWP’s own medical examiner to my house. They often do this as a matter of routine, in cases where the level of disability is in doubt. One lady who worked for the CAB described to me how the DWP medical assessor pressurised her to raise her hands above her head, even though she had said the pain from her Fibromyalgia was too severe. She broke down from his questioning and bullying tactics, but didn’t raise her hands above her head: partly because it would have caused her unbearable pain and made her Fibromyalgia worse, and partly because if she had done it, he would have ticked it off on his sheet as ‘can raise hands above head, no problem’ and she wouldn’t have got the benefit. As it was, he marked it down on his sheet as ‘refused to cooperate with the assessment’ and she had to appeal at tribunal (she won).

When I went into the tribunal that day, three people (only one of whom was a doctor) questioned me. They didn’t only question me about my disability, but about my motives. “Don’t you want to get better?” they asked, as though disability were a lifestyle choice. “You will want to learn how to cook for yourself, won’t you?”

I broke. I cried, and felt like a hypochondriac. I would have walked out (or rather, been wheeled out) there and then, had my degree-educated, thoroughly-researched husband not been there beside me, answering for me when I couldn’t face any more. I won my tribunal. I didn’t feel triumphant; I felt traumatised.

No wonder the statistics said those without CAB advice or legal support were far less likely to win their tribunal. They will have been bullied right out of there. And now, with the government cutting legal aid, I dare say those numbers of tribunal successes will be kept at a government-pleasing low, irrespective of whether or not the DWP make the right decisions.

I was shocked at the effect that the DLA tribunal had on me. I had spent hours scrabbling around the internet to try and work out why on earth the DWP were refusing genuine claimants, and what were the ‘right’ words to describe your disability, all in order to get the £900-a-year benefit for Lower Rate Care. (Despite needing a wheelchair for any distance over 200 metres, I would not have qualified for the mobility component).

The stress of the appeal, the being labelled a liar and scrounger knocked me. The emotional strain contributed to a worsening of my physical illness. I can quite understand why those who have mental illnesses are significantly in danger of committing suicide when they receive a wrong judgement from the DWP.

A few months after the end of the appeal, the brown envelope came again – I had to reapply. The rate of fraud for this particular benefit has always been extremely low: even the DWP’s own figures estimated it at 0.5%. Frankly, I could understand why. The hoops are so hard to jump through.

****

Under DLA, if your condition was variable or non-permanent, you were reassessed – regularly. This is nothing new. The only cases where people were not reassessed for DLA were cases where it would have been a waste of taxpayers’ money to do so, (for example, congenital blindness.) Now the taxpayer will be paying for such people to go through the stress of constantly being reassessed for PIP; presumably to check for the miraculous. (This also gives the government the option to further change the qualifying criteria for PIP in the future, excluding more disabled people from receiving help.)

I will say it again: DLA was never awarded on self-assessment alone: you always had to provide written medical evidence from your doctor. They always had the option of sending their own DWP medical assessors – which they frequently did – and they always had the option to contact your GP and converse with them, which as far as I can tell, they didn’t.

It was only in cases of severe and irreversible disability that they didn’t constantly reassess. This seems like a good use of the taxpayer’s money, not a bad one.

And remember, DLA is a benefit to help disabled people with the extra costs of everyday living. it is not an out-of-work benefit: indeed, many people use their DLA to put towards hiring a car so that they can get to work more easily. (This is the motorbility scheme: not quite the same as saying ‘disabled people get a free car’).

So what has changed?

The biggest change is the descriptors for who qualifies as disabled.

Can’t cook a meal for yourself? Under DLA: disabled. Under PIP? Not disabled. No benefit.Can’t walk more than 100 metres? Under DLA: disabled. Under PIP? Not disabled. No benefit.

And what of the claims that the government want to help the most needy?

What this means is that they will continue to give the benefit – the same amount of money, not an increased amount – to those who can’t walk more than 20 metres.

But to all those who can only walk 100 metres (From a non-disabled space in the car park to the supermarket, but not inside the supermarket, and not the return journey to the car) – no help.All those who can only walk 51 metres (from your front door, across the other side of the road and back again) – no help.All those who can walk only 25 metres (from your front door, across the other side of the road, but not back again) – benefit cut in half.All those who are too ill to cook a meal for themselves – no help.

The government will give support to those who can’t walk 20 metres, this is true.

But only if you come, once a year or so, to an assessment centre that may or may not have disabled access, run by an organisation (Atos) that has secret targets to keep the payouts as low as possible, (yet no penalty if their decision is found to be wrong at tribunal). You will then be seen for 30 minutes or so by a nurse or Occupational Therapist (doctors are expensive so kept to a minimum), who may have no knowledge whatsoever about your particular condition and the complexities of it. You better hope you look ill on the day.

It will mean a continual fear of not knowing whether you will get your money.

It will mean that the most vulnerable in our society will feel sick to their stomach every time that brown envelope comes in.

It will mean a cut of £2bn on disability allowance, but an increase of almost £1bn to pay Atos to administrate these changes.

Have to say its not fair BUT there are a lot (and I mean a lot) who know how to fill these forms in to their benefit and it's to stop THEM that they have to be tough. I know that's no consolation to you but think how many scroungers there actually are. And yes, I DO know!

By the way. As much as I get blog moderation, you are restricting comments to those who can get their head around the captchya. There are some of us who are asphysic - that is, it takes us a while to get our head around stuff.

Much as I love you guys (and I do) disability covers a massive range. Just that some of of us would appreciate not having obstacles in the way. Ta.

I'm so sorry to hear you're having problems. The CAB and the website Benefits and Work are very helpful resources, I've found. If you have a sympathetic MP it doesn't hurt to give them a bell too. I really hope you can persevere, becuase it's not right that people are put off in this way (though I understand totally that sometimes it's not worth the emotional strain.)

Sue knows that I've always stated it's tough so tough you will occasionally get rough handled by the so called doctoryou will get abused by the DWP for missing a deadline even thou the phone number they give you wont even work and is dead

Every trick they play on you will give you nightmares it may get so bad you will end up insane like myself with a very skeletal body frame as i am a long term benefit recipient

They may pay you out your benefit regular but that will depend on how good you've been like staying house bound

should you go out and a neighbour catches you and reports it your benefit will stop the dwp will then come round your house and tell you off and start your benefit again after a few months punishment

they will however back date it but with a warning you go out again by yourself and we'll stop it again

some DWP staff are wonderful but cant do much as they will be sacked so they tell me

As i say out of all benefits claimants in the UK I've lived way to long and now wish to pass away as the fight in going forward cant continue as i am unable to sleep at all so am in a semi confused state at all times and with tinnitus Ménière's disease as well as many other symptoms I've done well but alas I'm doomed

at least i can say what it feels like to be in a country like Burma where you monitored at all times and are only given the very basics my family have suffered the most however and until I'm dead will continue to suffer as they have had to witness my decline over the years

Nick, have you asked your GP to get you evaluated for Complex PTSD (post traumatic stress disorder)?

I am currently pushing my own doctor to do so. Not only have I developed high blood pressure (normal before) under the benefits harrassment, but I suffer constant anxiety, stress and depression.

For more than 2 years my first waking thought every morning has been Benefits, Forms and Interrogations, and there is NO waking moment when the worry isn't haunting me. I lay awake at night worrying, and when I DO sleep there are only more terrors about medicals, interrogations and forms.

My mornings are spent on tenterhooks waiting for the postman at 1.00 pm, in dread of the brown envelope. I watch anxiously at the window, and I can't even eat breakfast until I know for sure he has gone.

I don't phone friends or family any more. I used to read a lot but can no longer concentrate because of the pounding dread about Benefits.

Every time someone the phone rings, my heart pounds, I get chest pains and I feel dizzy and short of breath. (I am aware that these symptoms COULD be warnings of a heart attack and not just panic.)

And I have not dared to a TV or radio switched on in my home since 2010. Not only can I not concentrate due to the constant stress, but because no matter what the channel, there is never any escape from news bulletins, mentions of politicians, vilification of claimants or appearences of individuals such as Iain Duncan Smith. Having such media switched on only increased my sense of a lack of control in my life and the constant nervousness that at any moment something triggering would be thrown at me.

I am also dogged, on a daliy basis by thoughts of suicide, as the government dispenses my existence from one Atos form to the next bullying and abusive WRAG (for the crime of being housebound with permanent degenerative disease) interrogation to the next round of cuts.

Talking about this to a friend who is a former psychiatric nurse, she pointed out that this covers all the symptoms of Complex Post Traumatic Stress Disorder - from the sense of my life being under constant threat, to being repeatedly traumatised (from DWP/Atos harrassment), to trigger avoidance (Tv/radio), panic episodes, and the constant anxiety and dread.

"Complex ptsd" is where the condition is caused by on-going abuse, as opposed to a one-off trauma, such as an accident.

And apparently PTSD is considered to be a PSYCHIATRIC INJURY due to outside trauma, not a 'mental illness' that the DWP could 'blame' on personal issues (not all GPs may realise this).

I know that I am far from alone in experiencing Brown Envelope Syndrome - but perhas it is high time the disabled community started unmasking it as PTSD induced by government abuse.

I also hope that a case can be made for a great many of us that this absolutely qualifies as PTSD - a PSYCHIATRIC INJURY (not illness) DIRECTLY CAUSED BY DWP/ATOS harrassment.

As such it could satisfy the ESA Regulations 29 and 35 to at least move anyone harrassed by WRAG in the Support Group (there is information about this on the Black Triangle website).

(I am currently struggling to do this although my previously reasonable GP turned into a shouting, ranting bully (traumatising me more and reducing me to tears) the moment I mentioned benefits and pleaded with him to sign a standard letter.)

I also think that THE GOVERNMENT ALREADY KNOW ALL THIS (as well as about the risk for sudden adult death syndrome heart attacks, due to long term stress).

I think this is why DWP Ministers refused to meet with SPARTACUS and Michael Meacher MP.

McVey quoted Prof. Peter Beresford's comparison of the WCA to wartime tactics against wounded and SHELL SHOCKED (i.e. PTSD) soldiers - knowing that a professional academic would never make such a statement unless he could back it up with a hugely shaming mountain of evidence.

they do they know that keeping up the pressure on the long term sick will eventually kill them and your doctor will tell you that they certainly have made my condition worse over the years and fully destroyed my family life so that i cant go out with the family to celebrate something like a birthdaySame as in Burma and the likes keeping the weak repressed at all times

i am under a mental health team and have been for years as I've been ill a long time some 33 years so have had a odd sort of life bound up with strict rules and regulations so that is to be expected

now at 60 i have to get to 66 the full retirement age to get any piece but it's most unlikely i will ever make that age as my mind is now fading after 33 years in the care of the DWP

my pain is not only for myself but for everyone else going through the process which is loaded against them and ending up like myself

The bottom line is it was a very wicked of the all the governments to introduce bills that would cause mental harm that can never be right be it in the uk or Burma or wherever

i have spent more time don't forget under a regime just as bad as Aung San Suu Kyi from Burma who is now free that will never happen to the likes of myself so yes I'm very bitter but there's no going back

A lost life is a lost life however you slice and dice it and as iv's said above my body proves the point very well and is crystal clear for all to see given the opportunity

This pig-s**t government is lacking any intelligent or humane thought process. At any time a millionaire can tuck away untold amounts of money off-shore to avoid taxation and be considered a person worthy of praise (pass me the sick bag), whilst down at ATOS centre of disabilty assessment, Mrs Smith is being persecuted like a low-life liar for being unable to lift her poor hands above her head without feeling unbearable pain. I am so appalled and sickened that MP's have sunk so low, just because of the silly matter of saving miniscule amounts of money that wouldn't even cover a politicians summer vacation surcharge costs. Truly truly apalling, evil manipulation of a very vulnerable element of Britains population that deserves upmost respect. I wish this f***ing coalition scum-bag government understood how disgraceful it is being. Why on Gods earth are they so damn ignorant, it is chilling beyond belief! The truth is, even if Conservatives/ Lib dems,(or whoever they are), actually got the country's debt down to zero, i wouldn't vote for them ever anyway. They are too damn unkind to ever warrant or deserve to be elected again. They have had chance after chance to do good, yet have continually stuck two fingers up to the people that needed them most. So much for an honest decent caring democracy, eh Dave, you sick b*****D.

P.S: Apologies to Tanya Marlow and Sue Marsh. Your words moved me to write the above, which i did whilst still being a bit angry in my mind, hence the aggresive nature of some chosen words. Sorry if sounded a bit OTT, hope didn't offend anyone. Thank you.

Thanks Tanya I'm just sorry that my comments are negative but when you been in the DWP system for over 30 years you will end up bitter as you've had your freedom taken away from you and are no longer the person my wife married

You are indeed nothing more then a piece of dirt as that is how the DWP have always describe you face to face and my body frame proves that point and even IDS wont be able to wriggle out of that

He's overseeing a ruthless bunch of thugs who make grave errors sending many to their deaths through negligence and will continue for years to come with no redress that you can be assured of

Martin, it never offended me as I feel the same. I dread the postman coming each day, I dread the brown envelopes and get so het up and distressed that my husband has to deal with them. I am terrified of 'phone calls - it's making me paranoid, and I think thousands of disabled people are suffering in the same way - this stress brings on the mental health problems or exacerbates the already mental health problems, which in turn makes your physical health worse and your disabilities become unbearable!Both myself and my hubby are disabled and our nerves are continually shredded. I'd say that we'd be better off dead but I won't give IDS the satisfaction. I just wish we had the money to stay off the grid or move to another country!

My apologies to you both as well. I feel so much frustration with the disabilities as well as all this unnecessary stress, as thousands of others feel the same :( It's as though we are being hounded out of society!

Thanks Jacqueline. I would like to firmly impel my size 9's deep into IDS's lower groin region on a daily basis, but i think it would just be a waste of good shoe polish, as i doubt he has a pair hanging there! ;-) Look for the sunshine in someone's smile, for they felt that it was worthwhile. x

It has all been a nightmare. I am so sorry to hear of all the problems you had. We need a disabled person as a Disabled MInister to fight our corner. What is happening is not even humane.It is a shame newspapers are not printing these stories. So many people don't realise the truth of the matter. With all the rules and regulations I feel sorry for those with a learning disability who won't understand half of what is going on. We must all keep going, sharing our lives. I agree the PIP is not fit for purpose. It is so sad so many disabled are going to have to go through this stress over and over again...Stay strong and thanks for sharing.

My daughter can walk twenty metres. I am on low mobility for her. Yet I have driven her everywhere for 25 years. She can't get to doctors appointments without me and she failed a mental capacity test. Yet I am rewarded mild mobility.

This was like reading my own story without the positive outcome. I am lucky to have social services to organise someone to come and cook my dinners and give my baths and wash my hair, and I wait in terror for the day that they can't afford for such luxury to be bestowed upon me.

"The stress of the appeal, the being labelled a liar and scrounger knocked me. The emotional strain contributed to a worsening of my physical illness. I can quite understand why those who have mental illnesses are significantly in danger of committing suicide when they receive a wrong judgement from the DWP."

A few years ago, half my immediate family committed suicide, leaving my mother and I alone. I have PTSD. I also suffer from Bipolar with substantial depression.

When I applied for DLA, it took months to fill out the form, but I finally managed to write it all into sentences, to describe how the nights are in the house where I found their bodies. I confessed to the most shameful dangerous thoughts. There are things worse than suicide. I'm not sure you can imagine, and I wouldn't want you to.

The DWP (eventually) wrote me back and, amongst other denials, told me I "am not a danger to myself or others"

I was so distraught. In a part of my darkness I wondered if I was even real. There are things which are unacceptable: I've since decided that pretending human responses don't exist is one.

It's taken a long time to get back to the right frame of mind, which is to accept my emotions, without accepting the inevitability of acting on them. And that's important for more than my sake.

Whoever sent that first reply probably sleeps like a baby at night. They're lucky.

I've just found your site via twitter while looking for posts my friends made about my blog. I only started this weekend just to vent some of my feelings but I'd be grateful if you could take a look, thanks, Ciara

We need a regime change and democracy bringing to this country. We are living under a fascist regime and it's the same story across the whole world.Greece, Italy, Spain, Portugal, Cyprus and even the USA, all are in financial collapse and it is the everyman who is paying for it...

I remember applying for DLA. The first time I got hold of the forms I got half way through, hit the point where I had to talk about my worst days, gave up and tried to kill myself instead. No one's fault, just having to focus on how bad things was too much for me at that time. Second time, a close friend took me to the CAB who helped us fill it in. The lovely woman who helped said it was good I had gone to them because it meant they already has all the info when it inevitably came to appealing. Even with all that support the whole process was so stressful I ended up too sick to leave the house for weeks afterwards. I was turned down and couldn't face the appeal process.

We need people to help picket the PCS national conference in Brighton on 21 May. Let's put pressure on PCS to work with us to fight the benefit barbarism destroying so many people's lives, rather than set the police on those of us who campaign against the Welfare reforms. Please circulate this widely, and invite all your Facebook friends.

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About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.